Sunday, August 29, 2010

The Happiness

     I suppose that when reading about parenting B it is easy to feel overwhelmed by the large scope of her disabilities. It is quite a lot, with the doctors and the meds and the difficulty we face in accomplishing even day to day things. For instance, most twelve year olds have been doing things like washing and dressing themselves for quite awhile, and B doesn't do those things without direct supervision and considerable help. Largely, that's a memory issue. You can't say to her, "Go get your clothes and put them on," because most of the time she can't find the room she needs to be in, doesn't remember what she was supposed to get when she gets there, and needs constant prompts to do what she needs to do even when everything has been arranged and provided. That's just our life.
     Every single day, no matter what is happening, I feel overwhelming joy in being her mother, and I am always keenly aware that she is really doing remarkably well. The area of injury to her brain is very substantial, over half of the right side of her brain. It is not exaggeration to say that  if you or I suffered such a loss we would be suffering a much greater loss of function with truly significant impairment. Babies have an advantage, they have a clean slate of a brain, whereas we, as adults, have mapped our neural pathways. It is much harder to remap those pathways than it is to map them the first time, even if you need to map around a large injury. So babies can fair better after having a stroke than adults.
     But not always. B's pediatrician told me that he has patients with smaller injuries that are worse off, and ones with larger ones, like B, that do better. There is no way of predicting what the outcome will be, and I have always felt, although he has never said outright, that B is doing way better than anticipated given the size of her injury. This is due, I suspect, to the fact that her injury is from roughly the middle of her brain to the back. If it was at the front, where the higher cognitive skills are, I think she would be more delayed.
     There are areas that are just gone, and no amount of mapping around them will replace them. The occipital lobe is at the back of the brain, and she will never have full vision in her left eye (the right side of the brain controls the left side of your body and vice verse). Also, the areas that process sensory and motor control, which affect spatial reasoning, well, their injuries will be permanent. While I expect we will always TRY to help her develop these areas, I also accept that adaptations must be made. I have become really good at letting go of expectations.
     So, all things considered, I absolutely know on a daily basis just how lucky I am. She lived through a terrible health crisis when she was born, grew and hit milestones when she was a baby. Perhaps later than most, but she hit them. And she continues to grow everyday, developing insight, and knowledge, and a really keen sense of humour. And I am thankful to her, because being her parent has been an extraordinary challenge, one that has made me grow up, become kinder, and learn when and how to let go of expectations.
     And none of that means that I don't experience stress from having so much to deal with, or sadness at realising the space that has grown between her and my friends' children as they pass her by in development. It just means that it is absolutely worth it.

Friday, August 27, 2010

Not Very Sneaky

     Because B has memory problems and is emotionally younger than she is chronologically (emotionally she's 6 or 7, but she'll be 12 in 3 months), she has a very limited capacity for being sneaky or lying. I know that these things are viewed as anti-social, but really they are a part of normal development being as they represent an understanding of self-interest and self-preservation. Children lie, usually about small things, to avoid consequences and while it is our job to correct this behaviour, I consider it normal that they do it. I guess that, until you have a child that doesn't hit such milestones, you don't rejoice as I did the one or two times she has actually lied to me or been sneaky. Sure, outwardly I was all proper motherly chastisement, but inside I was thrilled that she actually had the forward thinking ability to lie to avoid getting in trouble. Parenting her is weird like that.
    But B usually does not do it, and not because she is morally superior, but simply because she doesn't remember doing something, doesn't remember she isn't supposed to do something, or because, due to anxiety, she feels compelled to tell me what happened.
     A while ago, Andrew bought her some great new bath toys and so I replaced her old ones with them. If I had done it when she wasn't looking, I know that she would not have noticed, or not until a very long time had passed. However, she came in while I was doing it and saw the old toys in the bathroom wastebasket and became very upset. It took quite a bit of discussion to get her to understand that there were new better toys and it was okay to let go of the old ones. She was talked into begrudgingly accepting this change, and I thought she would come around, or more likely just forget about it.
     Sometime later I was going through her closet when I found a box with a post it stuck on it that said, "Do Not Sneak In Box". It had all the bath toys I had I thrown out in it, including the empty Spongebob Squarepants bubble bath container (in my defense, the box didn't have a lid so I wasn't really sneaking). I doubt that she thought, "I'll come back later and hide these precious things," more likely she just saw them later and took them. But I was impressed that she hid them and even made a note. That is a fair bit of planning on her part.
     On Monday I bought some Nutella. Just a little jar, because it was my birthday. I gave her some and then left the jar where she was sitting. She wanted more, but I told her she'd get more later. I left the room for awhile, and when I came back, she was sitting in an awkward way on the couch, with her knees up and a blanket partially concealing her face. Her huge blue eyes were peeking out at me.
     "B, what are you doing?"
      "Nothing!" she said, and the blanket fell, and I saw that she had a fine coating of Nutella around her mouth and onto her chin.
     "Honey, are you sure you're doing nothing?"
     "Yes," she hid the jar under the blanket.
      "Because Mommy is pretty sure that you're sneaking Nutella. Want to know how I know?"
     "Because the jar, that was sitting right there, is missing, and you have a Nutella goatee."
     She looked very guilty and dropped the blanket, but I was too amused at her to be angry. I started laughing, and she started laughing, and then she jumped up and shouted, "You should take a picture and send it to everyone we know!"
     So I did.
     The little monkey ate the whole jar, too.

Tuesday, August 24, 2010

(Lack Of) Services

  Yesterday I received an e-mail from my daughter's therapist about a program we we were trying to get B into. It is a program to help children and parents learn skills for dealing with anxiety. This is part of the letter our therapist sent me:

"N isn't sure if this group would be helpful for B. She says it is very fast paced and not designed for kids with a complex developmental history. It is usually run by medical and/or psychology students under supervision who would not have any real experience with children like B. But she says you can call her and discuss B's needs more fully and see what you think."

     Here we we have a problem that I run into all the time. Services have restrictions for eligibility. On the surface, that seems logical. A service must specify who they serve so that people get appropriate services, after all, for funding, to avoid duplication of services, so that the right people go to the right programs. The problem is that kids like B have complex diagnoses and they fail the eligibility criteria of programs not because they don't meet the criteria, but because they exceed the criteria.
     It happens all the time. To the point that my daughter currently only receives therapy for her anxiety. That's it, and it took a very long time to get that.
     Before she started school, she received very good services, through the Infant Development Program and the Centre for Ability. Speech therapy, occupational therapy, physiotherapy were all provided. When children become school aged, they no longer receive those services because the school board is supposed to step in, but their services are stretched so very thin that my daughter has not seen a speech or occupational therapist in eight years, other than diagnostic ones during assessments.Assessments we have. I have assessments on her through the nose. Turning those assessments into action that is where the system is failing.
     Can you imagine what it is like for those who don't have a diagnosis since birth? There are many students in the school system, right now, with no diagnosis and no assessments. I think about that a lot, I am very lucky that B was diagnosed with a stroke at birth, because not all kids who have a stroke are diagnosed with it. It isn't something that doctors look for at birth, and it is something that only time reveals as a possibitlity.

Tuesday, August 17, 2010

B's Seizures

     B's seizures are a huge, time robbing part of her life. She has had several different kinds. The most recognisable type, what are now called Tonic Clonic and used to be called Grand Mal, are the ones that cause loss of consciousness and rhythmic jerking. B has these ones rarely, and only when sleeping. Usually these involve transport to the hospital as they last a long time for her.
     Absence episodes, which used to be called Petite Mal, started when she was seven. They aren't obvious, she merely stops and stares blankly for about 30 seconds, then comes back and complains of a stomach ache. It took me about six months to realise that she wasn't just zoning out, a fact that made me feel very bad. We would be walking somewhere and she would just stop and go stiff, then crumple up as they ended. I just hadn't heard of them and she had been seizure free for quite awhile so I wasn't looking for seizures.
     Complex Partials are the most identifiable types she commonly has now. She has them a few times a week despite her medications. They are the most disconcerting and dangerous. She may start out aware that she's starting to have a seizure, which is terrifying for her. She usually moans, spits, and blanks out for them, or she may engage in movements, grasping things or walking off in a random direction. This makes them dangerous when we are out walking, she can't control the movement and can easily walk off in any direction including into traffic or down a flight of stairs. She has choked on food.
     Finally, she has subclinicals, or just random misfirings, all the time. These don't manifest physically, neither she nor any observer are aware of them, they are only recognisable on an EEG. The frequency of these varies, and on some EEGs they are more noted than on others, but they are the most impacting, because they interfere with her experience of time. They prevent her from  processing what is happening and destroy her ability to make memories. This makes part of her daily life inconsequential, since she neither knows what is going on nor adds to her level of experience. I think that is part of why she is young for her age. While other children have continuous growth and information processing everyday, she does not.
     Seizures severely limit her activities. She cannot be left alone around water, while she eats, and she cannot walk the half block  to school by herself nor play on the playground climbing gym unless she goes with someone able to catch and hold her. It is simply too dangerous. She must hold some one's hand down stairs, in traffic, and while getting on and off buses.
     Additionally, she has trouble accessing many things that other kids take for granted. Attending after school programs and recreation programs takes us much more work than most other people, and some have refused to take her, but that will get its own post.

Thursday, August 12, 2010

B's Doctors and Meds

     B has many doctors and other specialists. Currently she has a neurologist, a pediatrician, a GP, a ear nose and throat specialist, a sleep specialist, a pshychiatrist, a therapist, a public health nurse, and in September she will see a special pediatric gynecologist. These are all the people who are currently actively involved in treating her various health concerns.
     As you might imagine, it's a bit exhausting for both of us. This is certainly not a comprehensive list of everyone who has been involved with her, nor does it include the therapists I hope she will see soon, nor all the people at school that are involved in her care and education. Education will get its own posts.
      Today we saw her pediatrician, the doctor who has been with us the longest. He was the first doctor she had, as he was in the room when she was born, and we both like him very much. It is very important to get doctors and other specialists that we feel very confident in, because so many of the treatments  B gets are trial and error. When you are dealing with brain injuries there seem to be no clearcut answers, the brain is very complex. Healthy brains are complex enough, and an injured brain, well, that is an area where you tread lightly with those trained in treating an injured brain as your stick.
    Unfortunately, B's seizure meds don't seem to be working very well. When she was born she was on Phenobarbital, but only briefly, and when she came home from the hospital she wasn't on anything for the first couple of years as she seemed seizure free. When she was about two, she started having Tonic Clonic seizures, so she was started on Clobozam and I was trained to administer Diazepem per rectum for long seizures. She seemed seizure free at about five years old so she came off the Clobozam. When she was seven she started to have Absence episodes. It took me quite a long time to figure out these weren't just attention issues. She was was put back on the Cobozam, but this time the results were horrible. She did not sleep for more than a couple of hours at a time for over a month, which left me a crying mess. She was then put on Lamotrigine. This worked for awhile but then, despite ever increasing dosages, slowly stopped working. Last winter it was decided to add Epival to the Lamotrigine. The Lamotrigine dose was brought down, and the Epival added. For the last month and a half she has been on 100mg Lamotrigine twice a day, and 500mg Epival twice a day, and she is still having several seizures a week. The seizures she is having now are Complex Partials. Last Sunday she had two and slept for most of the day.
     So, now we will look at changing her meds yet again. It is a daunting process, as each old med must be carefully and methdically lowered and only when she is off can the new meds be slowly and methodically introduced. It takes a long time to even get them to therapeutic levels, let alone to see if they work, and then adjust them and give them time to stabilise.
   Every medication change involves having EEGs done. B has an EEG about every six months. She is such an odd duck that she LOVES having EEGS. Not so much for the actual examination, but because I learned when she was just wee that the child will absolutely not sleep for them, which is ideal, if she has had even a couple of hours of sleep the night before. So I have to keep her up the whole night and then, hopefully, she will sleep. Even then, it's not guaranteed she will sleep. I have kept her up all night and had them give her a mild sedative and still she has not slept. But she loves staying up all night. A couple of times a month she will come to me, hope in her eyes, and ask, "Do I have an EEG tomorrow? I forget," and I will say, "No, honey, you have to go to bed tonight," and she is disappointed.
     I'm not. I like sleeping.

Tuesday, August 10, 2010

Introducing B

     No, I did not just misspell "be" in the title. B is what we call my daughter. She is 11 years old and is the point around which this blog shall focus.
     If you met my daughter, you would think her to be very sweet, regular child, perhaps a bit young for her age.  There is no fault there, that is what she seems like, and even people who come to know her often fall prone to forgetting that she is a sweet and irregular child (I say this with love, I am an irregular Mom). You cannot see her disabilities. She is not in a wheelchair, she does not use a cane, she is not missing an appendage. Like millions of other children and adults, her disabilities are invisible, and although to her and I the disability is as real and palpable as a wheelchair, I have grown to accept, if not appreciate, that others can't see it.
     My daughter had a stroke about four hours before birth. Infant stroke is a rare occurrence, however, it happens more than you are likely aware of, about 2.4 out of 100,000 children a year suffer from a stroke.
     The causes are not always identifiable, but in B's case it is thought that a blood clot that formed in a vein near her liver is the culprit, and that a piece of that broke off and travelled to her brain. Why she developed this clot is not clear, as neither of us has a clotting disorder. She did, and now that is all that matters, because it cannot be undone.
      The result is a large area of brain damage, in the right occipital lobe and surrounding areas.  Here is a complete listing of the resulting conditions: severe and poorly controlled epilepsy, anxiety, impaired gross and fine motor skills, cognitive delay, missing sight and hearing on the left side, ADD, symptoms similar to Non Verbal Learning disability, sleep disorder, and a younger emotional age.
     I will make an entry about each of these, or else this post will become a novel. Before I end this post, I want to list her strengths: she is strongly empathetic, has a wonderful sense of humour, and she reads voraciously. She started reading at two, when she could name her alphabet randomly from magnets on the fridge. She still spends hours playing with the letters on the fridge. As a result she has an amazing and appealing vocabulary.
     My hope is that this blog will help educate people about children like my daughter, can be a way that I share all that I have learned with others, and that others will share what they have learned with me. I hope to do this with humour and  compassion. Please join us.